Saturday, October 01, 2011

Malachi's Menu

I wrote this letter for our daycare and thought it might interest you folks, too. I haven't talked much about Malachi's swallowing disorder on this blog, but I would say it is a major part of our daily life. Jaden can eat pretty much anything, whereas Malachi has a narrow diet consisting of thick purees and — much to my chagrin — super-sugary Pediasure, because he is unable to chew and swallow properly.

For readers who aren't parents, I should explain that "solid food" for babies means anything that isn't milk. For readers who are parents, towards the end of the letter are food ideas that we use that might be helpful for you or anyone with a typically developing 6- to 12-month-old.

If anyone out there is also dealing with dysphagia, I would love to have your comments, advice, etc.

Malachi has a swallowing disorder called dysphagia, which doctors tell us is unlikely to ever go away. For him, this manifests as a delayed swallow reflex, which means that he is at risk of inhaling his food, which in turn could lead to aspiration pneumonia and even death.

Fun stuff.

Malachi also has trouble closing his mouth completely, chewing his food appropriately and moving the bolus (food blob) around in his mouth with his tongue.

Combined, these problems force us to feed him only pureed food or dissolvable food (i.e. things that become puree when in contact with saliva, like Cheerios and Gerber Puffs).

You are welcome to try foods that seem to conform to this list, but only try small amounts and stop immediately if he coughs and gags. Do NOT try hard foods, such as real fruit pieces (no matter how small) or bread or other things that would choke a 6-month-old.

The overall goal of food we offer him is that it be thick enough to slow down the swallowing process. Thin, watery foods can shoot quickly down the throat, too quickly for his muscles to react.

The secondary, but also very important, goal is to provide him with as many opportunities as possible to direct his own eating. Intentional action plus success equals brain connections, so the more he participates and is rewarded for his participation, the better. This means offering him self-feeding foods at every meal and waiting for him to open his mouth or otherwise indicate interest in food before putting the spoon in. This also means stopping when he repeatedly refuses to eat, no matter how much or how little he has eaten.

This is all much harder than it sounds, as I am intimately aware.

Positioning:

Malachi needs to be supported while he eats so that he can concentrate on his mouth. We feed him in a chair that fully supports his back and head and is reclined at about 60 degrees. We also put a rolled-up dish towel on his left side as he tends to lean that way and can get stuck if he goes too far.

In recent weeks, we have also fed him a bottle this way. However, if he is particularly fussy or tired we go back to the old way. The old way is reclined on a pillow at 45 degrees with his head and, ideally, his entire body turned to the side with his legs tucked up and his chin tucked down. This prevents liquid from seeping down his throat by using gravity and the natural throat closure that happens when your chin is down.

Bottles:

Malachi takes Pediasure after solid food meals. It needs to be thickened with two scoops (1 scoop per 4 oz) of Thick It. You will likely have to pour about an ounce out to accommodate the powder. I've been told it is ideal to whisk or stir it, but I haven't attempted that inside the bottle. If you do shake it (as I do) shake it as lightly and as briefly as possible, otherwise the Thick It will form hard, clear chunks that clog the nipple. Even if you have done it perfectly, you often need to check the nipple for clogs. Watch as Malachi is eating and if you stop seeing bubbles or don't think he is swallowing or if he makes frustrated sounds, pinch the nipple below the hole and squeeze upward until you see bubbles or liquid come out. Careful, the clog can come out with some speed.

Sippy cups:

Malachi should really only get water in a sippy cup, away from food. As long as it is clear water, it is unlikely that aspirating it will do damage to his lungs. He will likely cough after sips so be careful not to overwhelm him.

Things he can feed himself:

Veggie Sticks

Skinny Fries

Graham crackers (Honey Maid dissolve best. Off-brands not as well)

Cheerios (the multigrain are best because they are "lightly sweetened" making them stickier)

Puffs designed for babies (Corn puffs tend to be a perfect size and shape for his hand) I tend to use these sparingly as I don't think they're very healthy

Baby Mum-Mum crackers

Very thick purees (the consistency of refried beans, mashed potatoes, or sweet potatoes — this gets very messy, but he can get a little in his mouth)

tiny pieces (the size of HIS fingernail) of freeze-dried (not dried or dehydrated) fruit — these sort of melt away

Real fruit in a mesh feeder (we haven't had great success with this, however)

7 comments:

Would Malachi like something my mom called drinking custard? It's basically cooked eggnog. Milk, egg, sugar cooked until thickened. You can adjust the thickness by adjusting the milk and egg content. It's sorta like the base you make for home-made icecream, too. Fruit puree could easily be added.

There is also an older kind of custard called Junket. You get rennet tablets, called Junket, at the store an add it to the milk as directed.

Thanks, Faith! That's a good idea, I'll have to try that. Still... I worry about how much sugar he eats. It seems like everything he can eat is processed carbs and refined sugar. I try to get him as much fruit puree as possible, which is good, but it would be nice to get him fresh fruits and some veggies. Custard is a good idea though!

Can he handle things like cornmeal mush? Thickness can easily be adjusted on that, too, and fruit and veg puree can be mixed in. Brown Rice cooked soft and blended/food processored could make a good base for fruit and veg puree. Minute Tapioca can be used in milk as I suggested earlier, but it is also a really good thickener for fruit dishes, too. I haven't tried the recipe that is in my mom's cookbook but it looks like a possibility: Grape Juice Tapioca - 2.5 cups water, 3/4 cup sugar, 1 cup grape juice, 2/3 cup minute tapioca, juice of 1 lemon. Combine sugar and water, boil until sugar is dissolved. Add tapioca and cook until clear. Add lemon and grape juice, continue to cook for 3 minutes. Several other recipes look similar but with either a fruit or veg. cooked in with the juice. Have you ever seen the Super Baby Food book by Ruth Yaron? It may have some suggestions, too.

He is. We have feeding specialists at the hospital and one from Early Intervention. However, as part of our recent trip to California, we worked with an SLP who had a lot of good suggestions and said she was a dysphagia expert at Humboldt County Hospital. I have a lot of hope that she can help us kick this thing. But.. Eureka is still a pretty long way from here.

Sophie also has been diagnosed with dysphagia. Her diet consists exclusively of Pediasure and water. We do give her a variety of foods such as fries, organic baby puffs, fruit purees, and others but she doesn't swallow any solids at all. It sounds like Malachi has a few experts for support, that is awesome!

Interesting, Lauren, thanks for sharing. Keep trying with those dissolvable foods and she'll swallow them eventually. If she's swallowing Pediasure, she'll swallow those foods too! You can also mix in purees with the Pediasure!

Books by Shasta Kearns Moore!

Prayers, thoughts, well-wishes, intentions, good vibes, whatever

Here are a few key things on our cosmic wishlist for Malachi's recovery. I don't care who you address your requests to, but I do believe you can help us right now by taking a moment to ask your divinity for these things:

» The patience and stamina to explore his body and what it can do.

» The ability to swallow food and liquids normally.

» Stability through his trunk, including strengthening the flexor muscles.